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cherrymom 10-25-2010 11:36 PM

Does your port wine stain turn white?
Hello, I am concerned that my 3-week old baby son may have Klippel Trenaunay syndrome. We are going to see a specialist but it takes awhile to get an appointment. He has a red birthmark covering a large part of his left chest, left back, circular mark in the middle of his back, and his left arm and hand are covered as well. The thing that makes me think it's KTS is that his left arm and hand are puffier/larger than the right - about 1 inch difference of thickness last time I checked.

All the Internet research I've done on port wine stains says that they do not change colour when gently pressed, yet when I press my son's birthmark it does turn white momentarily then reverts back to the reddish pink colour. Does that mean I should rule it out as a port wine stain?

nickbar 10-26-2010 01:45 AM

No, I would not rule that out. It is important to have him evaluated by a specialist that has extensive experience treating and manageing KTS. I would highly recommend writing to Dr. Defanian on the ask the expert page

teardrop2 10-26-2010 04:42 PM

My child has a PWS on his face, it is surely PWS. And it also becomes white when I press it. I think this is normal, because capilares on PWS are wider than normally, and so they hold more blood. When one presses the capilary is squeezed and for a moment with no blood, thats why white. As soon as you release the pressing the blood comes back again to its position and the PWS appears again.
I hope your son does not have KTS, and that further examination will show only that, nothing else.

LizH 11-11-2010 04:08 AM

My (diagnosed) PWS always turns white when it's pressed, then turns back to red or purple afterwards. I definitely wouldn't rule it out. Good luck with the appointment, keep us updated!

cherrymom 11-21-2010 10:51 AM

Thanks everyone...will keep you posted.

florina 08-23-2012 06:29 PM

Hello cherymom,im also woried bcs my doughter have the same pws like you describe and also her hand is litte puffier,but pediatric told me to wait one year bcs,puffines is from elarged capilars,pls tell me does your child was diagnosed with kts ore not,hope you are gone answer. me,all the bestjj

vksheilds 08-31-2012 02:15 PM

Its not really practical and sound typical in my life anyway #florina is practical evidence so would have to understand right

alton 09-22-2012 06:53 AM

Nice post. I like it. Thanks for sharing these information. Keep it up. :mad: ;)

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